Monday, 27 May 2013

So 40, hey? Tops right? I'm sure it is. Really I am. My sexual prime is rocking. I feel totally in touch with the womanly wonder that is me. It's epiphanies left right and centre. Glitter is thrown at my feet by kittens riding unicorns, as I stroll with confidence around my lounge room. And choirs of angels are singing about the glory that is my 40-year-old body.

Or.

I could be heading to a diagnostic mammogram tomorrow, because even my boobs are stupidly defunct. Happy 40th, now lets squish your miniature mammaries into pancakes/pikelets/poffertjes.

I actually found the lump before my 40th but just couldn't face another broken body part before I made it out of my 30s. There's a limit to the amount of decrepitude a girl can handle before she clocks over into the big leagues. You see I've been down the lumpy boob route for 10 years now. Had my first biopsy before my 30th birthday and had my first chunk of dodgy boob cut out not long after.

But enough is enough. So I waited until after the big four oh, thinking it'd be nothing yet again. But it's never that simple, is it?

Remember that song from Sesame Street, "one of these things is not like the others"? Story of my life. My boobs, small as they are, may be best described as feeling like a bag of marbles, courtesy of all the cysts and fibroadenomas that rattle around in there. But every now and then, one of those marbles doesn't feel like all the others. This is one of those times.

I swear chronic illness is best defined as being felt up by strangers on a regular basis. This occurred to me Thursday, as I lay topless yet again on the table in the GP clinic. My regular GP was booked out. My back up GP had left the practice unbeknownst to me, which meant I had to risk a new doctor. Normally I'd wait till I could get into my regular GP, but sometimes things crop up and you need to be seen (or in this case before I changed my mind). So once more I found myself agreeing to be groped by another stranger.

I lay down whilst she listed off my collection, "one o'clock right breast", " four and five o'clock", "10 o'clock"..... (Is is wrong that I distract myself be thinking of the Play School Rocket Clock, every time I go through this process?). I sat on the edge of the bed. Arm up. Arm down. Whilst she concentrated on my minuscule mammaries. I sat there like the performing monkey I am. Resigned to that fact that any dignity I had is long since past.

After much in the way of arm acrobatics and going through my lengthy history, I was told that I need to be scanned.

Normally I just do an ultrasound every 1-2yrs to keep an eye on my collection. The girls are incredibly dense (aka stupid) despite being so tiny, so ultrasound is the way to go. But nope apparently that's not enough this time. Now I have to be squished and have the ultrasound. YAY.

Who even knew there were different types of mammograms? Not me. So we're skipping regular and going for the diagnostic one, because I'm special.

When I rang last week to set up my appointments, it occurred to me that you stand for a mammogram. Which could be kind of problematic given the whole 'standing ends in falling over' issue I have with Dysautonomia. I've had visions of me lying passed out on the floor my aging boobs stretched before me nipples still stuck in the plates of the machine. After pointing my dilemma out to the receptionist they have agreed that I can sit whilst they do the scan or at least in between each one. I am also wondering how they will get my concave breasts onto the plates. Surely they need something to work with?

So tomorrow my best friend is coming with me to my inaugural boob squish. If anyone can make me laugh and take my mind off it all, it's her. She's also not afraid to slap me round and tell me I am over-reacting if the need arises. Because that's what good friends do.

No doubt it'll be nothing and all my worry and stress will be for naught. Which will also shit me as I have little in the way of reserves and my neuroses should be reserved for the stuff that does matter. Wasted energy and wasted grey hairs.

Saturday, 25 May 2013

Bradycardia is a fancy word for a slow heart rate. Kind of rolls of the tongue, doesn't it. Sounds like a cool novelist name, The Heart of Meh, written by Brad Y. Cardia. Fantasy is my bet. There'd be swords and dragons, the main anti-hero would be kickarse but constantly foiled by her need to lie down every 5 minutes. Kinda hard to fight a dragon when you're comatosed on the ground. Though maybe she'd use it to play possum and come out fighting after the dragon had discounted the threat. Or maybe the novel would be 3 lines long as the hero suddenly keels over and becomes a dragon chew toy. That sounds more realistic. (I may be watching way too much Game of Thrones.)

Bradycardia is generally defined as a heart rate under 60. For me 50s aren't unusual, and I'm not usually all that symptomatic. A bit tired maybe but not worryingly so. But when I hit the 40s things start to become unpleasant. When those 40s persist or hit the 41-42 mark it becomes really unpleasant. Now I know that for some elite athletes 40s may be their natural resting heart rate. But lets face it I'm hardly an elite athlete. I'm pretty sure an elite athlete's eyelashs could beat me up and leave me whimpering on the ground, freely offering them my lunch money. Low 40s are simply not a fun place to be. I'm pretty sure I've hit less than 40 but I have learnt that my bp cuff wont register a heart under 40, which is kind of a bummer. I would like to know just how low it is dropping.

Bradycardia is getting the best of me at the moment. I've had it off and on over the years (my max hr of 88 bpm after 10mins on the reclining bike used to bemuse the staff, it also made exercising hard) but of late it has taken up residence in my chest and seems intent on staying. Even when getting IV fluids the last few weeks I was having drops into the 40's and 50s much to the consternation of the staff. Increased fluids in my veins should technically help my heart rate, but no. It's a fickle little turd that doesn't like to be told what to do and decided that it wouldn't play the game.

Last week those who follow on FB will know bradycardia hit hard. As in, collapse in the kitchen, scare the bejebus out of both me and my son, hard. I have to be honest and say I haven't felt that bad before. I could feel my body shutting down. I was ice cold and starting to feel confused. That is not a nice place to be and one to which I don't ever wish to return. The level of pain in my heart alone, is something I could do without. It's been a long time since my family has been worried about leaving me home alone. And even longer since I've been worried about being left home alone. That I haven't really picked up since that event is clear to everyone, including me, and that alone is a tad concerning.

The only precursor I can identify for last week's hijinx, 20 minutes of low level physio. And when I say low level I mean a couple of toe points and legs lifts. I did my final assessment which pretty much just confirmed my permanent status of completely knackered. But that's it. But exertion, in any form, seems to be a trigger for my bradycardia. Every time within 30-40 minutes. Garden for 10 mins, bradycardia. Vacuum the house, bradycardia. A couple of pathetic toe points and leg lifts, bradycardia. I'm sure someone told me exercising was supposed to increase your heart rate. Even going out for coffee with Mr Grumpy and walking around for 10 minutes left me with a weak and thready pulse that went blah........blah........blahhhh. Usually it'll pass within an hour or so, but last week it was a few hours. And since then shorter periods, but more frequently. Fun times.

A quick look at the research and the treatment options for bradycardia are pretty limited. The top three choices are: 1) Treat the underlying cause. Bwahahaha. After years of extensive testing they still can't pinpoint the cause of my symptoms. 2) Stop all medications that can cause bradycardia. Done. No more metoprolol for me. Which of course means rebound migraines and shakes. But still the bradycardia persists. 3) A pacemaker. This option has come up in past discussions with my cardiologist but it is more of a last resort solution as it can't be undone. Do I want to go down that route? I'm still unsure. Although if what happened last week were to happen again I think I would do it. Plus, peace of mind for both me and the family would be good. Yet more fun discussions to have with my cardio.

Wednesday, 22 May 2013

To talk to your kids about your illness, or to not talk to your kids about your illness? This is the question that faces every parent living with chronic illness. Do you tell them? If you do, what do you tell them? Is it better to shield them? Is it better to ply them with chocolate and give them a new Xbox game and pretend this question never came up? Or alternately, ply yourself with chocolate and hide in your bedroom watching repeats of The Walking Dead on your laptop, and pretending that the question never came up?

The reality is that for the most part your kids, no matter how old, already know something isn't right. And in all likelihood they will be creating all sorts of scary scenarios in their head. Kids will fill in the blanks if you don't. And often the filler they create is negative. It's one of those times a kids imagination and creativity can be quite unhelpful. Just because you aren't discussing your illness, doesn't mean they aren't still thinking and worrying about what is going on.

My kids were young when I first became ill. My youngest was 8 and my eldest 11. It was a hard and scary time. I had no idea what was wrong initially. Dealing with the stress of the unknown and my own over-active imagination was consuming most of my waking moments. I thought I was doing a good job of protecting them from my worries and my failing health. What I didn't realise is that kids are always watching and are way more in tune to what is happening around them, than we ever give them credit. Saying "mum's just a bit unwell", and generally minimising things, really wasn't working. But in my own distress, I was simply oblivious to that fact.

Problem was, that whilst I was doing this, my kids had convinced themselves I was dying. Worst of all they didn't want to share their fears with me for fear of stressing me out. Instead, they were quietly worrying themselves sick that I would soon be dead.

When they finally told me, it ripped my heart out. Here was I, thinking that I had protected them from what was going on. But instead they had born a huge burden alone for a long time. If I have ever truly felt like the world's worst mum, it was in that instant. From that moment on I decided to talk openly with my kids about my health. Well okay, that moment may have been preceded by much in the way of tears and gut-wrenching guilt, but once that passed I decided that I wouldn't hide things from my kids again.

Now admittedly, there are aspect of this illness that you can't hide. Passing out for example is pretty hard to cover up. But there is a huge difference between your children being witness to the event and actually discussing what happens and why. If not dealt with, the uncertainty and the unknown feed fear. When it comes down to it, it really is true that knowledge is power.

So what are my main tips?1. Be prepared: Working out how to explain your illness and what it means, before the discussion occurs will help greatly. For a complex disorder like Dysautonomia it can be hard to explain at the best of times. If stumped, ask fellow patients how they explain their disorder. There is bound to be an explanation you can use for your situation.2. Tailor the information to the age and maturity of your child: The information a child needs, and can process, at 8 is very different to 15 (as my youngest is now). But whatever their age, or level of maturity, there are ways to talk to them. Early on we basically told my kids that I had a heart problem, but the doctors were trying to work out how to make me better. Over the years this has evolved as they have matured. Now at 15 and 18, they want more detail. They know about the autonomic system and the problems I face. They know about my meds and the types of doctors I see and why. We are now open about the whole situation. But it is a process. It is easy to discuss these things now as we have been discussing them in some form or another for 7 years. Each conversation building on the previous ones.

3. Answer the questions they ask: don't overwhelm them with details unless they ask for them. Take it step by step. Some kids only want simple answers. Others are a sucker for detail. You don't need to overwhelm them with bucket loads of technical information, unless they ask. It can be a weird mindset as a parent, but you have to step back and let them lead the conversation.4. Be honest: My two asked me to promise to tell them if something serious was happening. My first reaction as a mum was to protect them. But in agreeing, I gave them a sense of reassurance. They no longer had to lay awake at night worrying if I was hiding bad news from them. If we weren't discussing it, it clearly wasn't an issue.5. Conversations can happen anywhere: if there are big issues to discuss, a specific family meeting can be great. But I've have found that most conversations begin when you least expect them. Questions are asked whilst you're making tea, whilst driving, at the checkout, waiting for a movie to start, late at night (mine are big on this, and many discussions have happened at 11pm or later). The important thing is to take the opportunity you are given whenever it happens, and go with it. The timing may be weird or inconvenient, but it is the time your child is finally comfortable and ready to discuss difficult issues. You simply have to go with the flow.6. Empower them with solutions: teach your kids what to do if something happens eg what to do if you pass out. This can be a scary time, but if kids know what to do it can alleviate much of the stress for them. Teach them them how to dial 000, 911,999 or whatever the emergency number in your country. Give them a contact person they can trust to ring in an emergency or if they are scared. Simply knowing to bring you water, or a salty snack when you are starting to fade gives them a sense of control.7. Include them in the process: Sit down and work out a plan with them. Eg if mum is on the floor and she wont wake up ring 000. If mum wakes up, bring her water, salty snacks, a blanket, keep the dogs off her (a necessity in our house).8. Empower them with knowledge: When an illness is chronic there are symptoms which are simply part of your day-to-day. My kids are pretty attuned to what is normal for me now. They know the cues for when I need to sit or lie down and it is all handled with minimal fuss. If I'm cooking tea and getting pale or starting to sway, they grab me a chair and a drink straight away. It's normal. It also means that they can detect when something more serious is going on (eg when I collapsed last week). When every day is punctuated with symptoms that can be scary and confronting (something I really notice when we have visitors who aren't used to my health issues) knowing what is white noise and what is time for action relieves a lot of tension.9. Lead by example: learning how to deal with your own stress and choosing how to live your life, part of which is illness, is vital. Kids learn by example, and as parents we are still the main influence on their lives. If we are consumed by illness and not managing our stress they will also be consumed by our illness and stressed. As mother's we are often taught to put ourselves last. But the reality is that in taking care of ourselves, we are in turn taking care of them. If our kids see us managing in healthy ways they will learn these skills simply by being with us.10. Utilise support services for kids: If you are worried that your child isn't telling you what they are feeling or you don't feel confident to discuss these issues there are services available. In Australia, Kids Helpline 1800 55 1800, is a fantastic free telephone and web counselling service for children. Similar services exist in most Western countries. You can provide your children with information about these services and let them ring at need. Family counselling can also be valuable if you want some professional direction and support as to how to discuss these issues. Letting your child's school know about the situation can also be useful. For example, they can provide counselling if needed, or simply alert you to changes in your child's behaviour. We met with our children's teachers and let them know what was going on. Whilst no major issues arose, the teachers appreciated being told and it definitely gave me some peace of mind.11. Kids are resilient: This is the final, and in many ways, the most important point. We often underestimate how resilient our kids are. But the one thing I have learnt over the last 7 years is that kids can show an incredible amount of strength and empathy. They surprise me everyday. If they feel loved and supported it is possible to make it through. We can't always protect them from the stressors of life, but we can provide them with the tools to manage them as best as possible.

We have had many ups and downs over the last few years. I wont say that at times it hasn't been stressful or tough. They still worry. I still make mistakes. And things go pear-shaped at times. But overall we are maintaining a reasonable balance in difficult circumstances. Being open with our children has been confronting and hard at times. But that's not unlike many of the issues we have to discuss with our kids as parents. But we can do it. And our children will be the better for it.

Cheers

Michelle :)

Okay I couldn't think of a song about talking I liked, but I do like Talking Heads and my kids love this song and it's parody Psycho Chicken.

Monday, 20 May 2013

(Loving my new The Walking Dead mug. Suits my state of mind perfectly.)

I've had a bit on an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it's difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I've noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk it's really rubbed me the wrong way. I've found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I'm all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don't exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong, is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it's tough and you might as well have said, "on my weekends I enjoy sacrificing small furry kittens to Beelzebub". That is where the crazy lives. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it's not okay in the face of the overwhelming positive brigade.

Sometimes what you need is one safe place to say it's not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don't need solutions. We don't need to be told that we should stop being so negative. That we shouldn't share. That we should always try to find the positive. Some days you simply can't, AND THAT'S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same head space as we are.

In psychology there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or it's lack, can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has it's place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don't need. We have a range of emotions for a reason and each have their place. We are all in different places in this illness journey and we can't expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven't experienced in a long time. My bradycardia was the worst it's been in....well, to be honest it was probably the worst it has ever been. I experienced all the crazy scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabalised somewhat I realised I was over it. Really over it. I've been sick a long time. I've had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn't scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone or crazy. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it's place. Today I can laugh and smile again. I made it through. Today's emotion losses much of it's salience if it's not seen alongside the darkness of last week.

Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don't exist or minimising another's experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that's one burden we can change.

Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Love this cover of Tears for Fears, Mad World. Plus it was featured in Donnie Darko one of my all time favourite movies.

Friday, 10 May 2013

Today is the last day of my 30's. Exciting, no? I'm sure I'm excited. Really I am. Well people keep telling me that I should be excited, or depressed, or that today should be seen as a last hurrah. But I seem to have a bad case of the meh.

40 seemed so old when I was a kid. Now it just seems like, well, I'm not sure. It just is. Yet another day on the calendar. Another year done and dusted. I just don't get the hype. I don't feel older. Well my body does, but in my mind I'm still 20, or 12 (fart jokes still crack me up). Apparently, I'm supposed to be hitting my sexual prime. Okay, I can't even type that with a straight face. And if all my years of Oprah viewing taught me anything it was that I am now supposed to have some epiphany and come into my own as a woman. Bwahahahahaha.

Don't get me wrong. I'm not upset or depressed either. And it is better than the alternative. It just doesn't feel like that big a deal in the scheme of things.

The lack of care factor could be partially due to the fact that the last week or so has been more a hello 80 than hello 40 moment.

Last week I was officially confirmed as disabled. Bonus. Yesterday was spent checking out tilting wheelchairs named Karma (obviously I kicked A LOT of kittens in a previous life if that's my karma). YAY. This morning I was mocked by my dosette box and granny compression stockings. And to top it all off I found a new breast lump. Woo Hoo! Celebrate good times. Come On!

Though in truth I've been pretty meh about the whole 40 issue for quite a while. I don't like fuss. I particularly don't like fuss about me. And these days, well fuss is just plain exhausting.

Part of me would like to party like it's 1999. In 1999 I was throwing back rocket fuel shooters in a dodgy karaoke bar in Middle-of-Nowhere, Vietnam. Surrounded by drunk Asian businessmen whilst singing a fabulous, if I do say so myself, version of Fame. Now those were good times.

In reality I'd be happy with a nice meal, chooks and a goat. Yep chooks and a goat. Don't tell me I don't know how to party. Though now we are moving my chook and goat plan has gone on the back burner till we get to the new house at the end of the year.

My 30's have made me re-evaluate what's important. Not out of any deliberate attempt on my behalf to find myself or any other such psycho-babble. But when life hits you upside the head and throws you flailing into the abyss you are forced to really examine all your beliefs and what makes life worthwhile. And frankly arbitrary time measurements and socially expected celebrations aren't up there for me. Good friends, the love of your family and learning that happiness is a gift you can give yourself are where it's at for me.

So goodbye 30, hello 40. Or as it really feels, hello another day of breathing with a potential for macarons.

Cheers
Michelle :)

If you do want to celebrate for me, give out 40 smiles tomorrow. Give them to family, friends or strangers. Or give them to yourself. You just might make someone's day, or even your own. xx

Because I am a child of the 80's and I really can't get excited about tomorrow.

Wednesday, 1 May 2013

My fun world of denial hit a snag this
week. A big slap-up-side-the-head, marching band, Vegas lights and
feather clad showgirls, snag. You see there's this weird
little lie I've been telling myself. Although I've been sick for 7
years, although I use shower chairs, a walking stick and on occasion
bring out he big guns in the form of Bernice, my wheelchair, and her
new, much comfier, replacement Vera to go to a shopping centre or
comedy festival, I have somehow managed to overlook the fact that I
may be disabled.

You see denial is amazing. It's up
there with fingers in my ears, closing my eyes, and saying “I can't
hear you. I can't hear you”. Although at some level I knew that I
was actually, shall we say, less-functional, than before 2006 and
even less functional again in the last year. Despite the fact I have
difficulty with my stairs, that I can't stand for long, drop things,
walk with either a catch-my-toes shuffle or wide uncoordinated gait
that would do a drunken sailor proud (my body likes to mix it up) I
have managed to compartmentalise, deny, or at least use a meh
attitude to get by.

I have managed to make it this long
without the word “disabled” being written in my file. Not that I
necessarily have a problem with the word or the concept. It's not that I even object to it
being applied to me. Well at least not in my logical, practical
moments. But, and because I am a long-term resident of Crazytown,
part of me said if it wasn't written in my file, then it wasn't
really true. I've said it before and I'll say it again, I should be
studied.

As of two days ago it all became fact.
Unequivocal, signed off by a doctor, fact. Now if I was a wearer of
big girl undies or had eaten a can of Harden up, Princess for
breakfast then I would probably be able to just see it as another
point in the road that I had to cross. I'd recognise that the piece
of paper currently burning a hole in my handbag will allow me access
to mobility aides and other help that I would otherwise not be able
to afford. I'd be all matter of fact, practical, glass half full,
blah, blah, blah. Unfortunately I am not that girl, and am currently
in a wee bit of a funk about the whole situation.

Logic is not my friend in this matter
although I am sure that at some point that will kick in, but hissy
fits, weeping into cornflakes, pouting and the consumption of large
amounts of baked goods must occur, before that point is reached.

The OT who I have been seeing has been
using gentle encouragement and that “come on now Michelle, time to
put those big girl undies on” look to get me to this point. In
truth she has gotten me further in the last few weeks than anyone
else has in the last 7 years which makes her a bit of a rockstar OT.
She has organised my paperwork, had me trying out wheelchairs and
basically giving me a reality check, for which I both love and want
to stick my tongue out at her. Between her and my physio it has been
a hard lesson to digest that I am worse than I had allowed myself to
believe. In my mind I was managing pretty well, it was only after
assessment that I realised that my idea of managing well, made me the
illness equivalent of one of those deluded individuals who firmly
believe they are the next American Idol, but are completely
unaware that they are tone deaf and have the rhythm of a brick.

So I sat in my GP's office on Monday
and handed her the sheets entitled Confirmation of Disability and
Disabled Parking Permit and watched her sign away my delusions of
still being an able-bodied member of society. Again I was subjected
to another example of how clear it is to others, even those who see
me sporadically, like my GP.

Now that it's done my family have come
out to say “about time, dumbarse”, (okay not everyone one
added the “dumbarse” part, but the tone left little doubt that it
was implied). It seems I was the only one left who had delusions of
my ableness. My ideas that “others need it more”, or “others
are worse than me”, was apparently total malarky. It's amazing how
completely blind you can be to your own situation. How you can tell
yourself lies and believe them completely. How the picture of me I
constructed in my head was more fairytale than reality. Denial is a
very warm and enticing place. I was quite happy living there.

So I sit here in the hospital sucking
down my saline and digesting my new existence. I'm still the exact
same person I was Monday morning before the forms were signed. I'm
trying to focus on the access it will give me more than the title. As
it is I have at least 18mths to adjust to the whole idea before I
even have a chance at a newfangled wheelchair. As my OT pointed out
(placated me), if I have a miraculous recovery in that time, I can
always say no to my new wheels.

It's time to put on my practical hat
and be all mature and grown up. But part of me is tempted to just get
up quickly and walk at a regular pace from the recliner chair I am
sitting in, to the loo round the corner without my cane, just to
prove them wrong. Taking a walk on the wild side, baby! It may all
end in tears, but damn it would feel good to give it a go.